Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.

IZEA

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Saturday, August 30, 2008

ferncohen.comWhile I heard stories of growing up poor in the Great Depression and teenage years during World War II from my parents, there were other kids, like my friend Toby Ridzinski, who grew up with a whole other legacy. They grew up with parents who had lived through the horrors of the Holocaust. Every once in a while, while I worked at Key Food, I would catch a glimpse of a tattooed several-digit number on the inner forearm of a customer's arm as she carried away the groceries from my register. I knew what it was-- a number the Nazis had tattoed on inmates of concentration camps.

Some children of Holocaust survivors spoke to their kids about the ordeal, and some never did. I remember learning that there were groups for 2G's, which stood for "second generation"] because they had issues none of us could ever know. Toby told me once that her father would have violent nightmares and wake up screaming. Another friend Anita, had a photo in her living room of a little boy of maybe 4 years old. She was an only child, so when I asked who the boy was in the picture, she put her index finger over her mouth and whispered "shhh, I'll tell you later". It turns out the boy was an older brother she never got to meet. You see, her parents were a good 15-18 years older than my parents, which was kind of embarrassing to her because she always had to correct people when they referred to her mother as her grandmother [which is kind of funny by today's standards, because when Anita was in high school, her parents were the same age as some parents of today. But back then, they were old. A lot of young parents of the Holocaust, especially if they lost children, started second families, often with "replacement" children of a new generation. We never talked about Anita's "older brother". She told me that one time who he was, to satisfy my curiosity, but I sort of knew never to bring it up again. The Holocaust survivors are dying off, many with secrets they will take to the grave. Some talked openly about their experiences, and many never did. And I'm sure there were even some who blocked out all memories of that painful time. And then there are the "2G's", who lived with, and were raised by parents who had lived through unspeakable horrors -- and suffered post-traumatic stress like no other.

So my physical therapist, Michelle, came from Gentiva Home Care. Herein lies the great Hoyer Lift paradox. Together with her supervisor, TJ, they got the Hoyer out of my basement storage. Now, I should point out that this thing is h-u-u-g-e! I have been resistant to having it in my apartment because of its size, and the aides have been resistant to it because I can still stand and transfer. But, there have been moments, especially when I was trying out the lithium, that I am just too weak to stand and pivot.

So we got out the Hoyer, and the two ladies struggled with it, and suddenly TJ says "this is just not safe to do with one person. You won't be able to use it." I emailed my friends at the ALS clinic, because they were the ones who told me to book PT to train on the Hoyer. Antoinette went through the roof, phone calls ensued, and the result was a second visit with another PT. No problem this time : he made it look easy with one person. But I thank God I don't have to use it yet. PT is wonderful, and very beneficial. Michelle stretches me out and I have been doing so well with transferring and standing. I intend to pay her privately once a week, when Medicare/Medicaid stops paying her, which will be probably in a couple of weeks. At $85 a pop, I will have to prostitute myself with any way I can make money on the web! I found sites where I can earn Amazon gift certificates, which are really good. And I am still doing everything I can, to avoid spending money! Needless to say, there hasn't been a whole lot of fun or enjoyment, but that's the way it has to be for now. I look forward to my weekly Starbucks outing. My summer culminates tomorrow with the annual Ride for Life party at the Pendergasts. And on Tuesday my friend Stacy is coming down from Dutchess County. She is leaving her two toddlers in the care of a sitter and driving two hours each way. It doesn't get much more dedicated than that! Wait until she hears that I need her to hang the picture she sent to me at Christmastime. How embarrassing! But I just can't do some things myself!My wishlist : to have the apt painted, have pictures hung, and of course to get into Manhattan and be able to leisurely roll around. And of course the beach -- this is the second summer I will not have seen the ocean. Special wheelchair-friendly mats have made the beaches accessible, and of course boardwalks are great. I am still looking for a group that does outings for disabled people. I am accepting that I will never again see an ocean, feel the sand, roll on a boardwalk, or smell the salt air. For someone like me, who has always lived for the beach, and never lived far from it, this makes me sad.

Through the DNNYC [Disabled Network of NYC], I managed to get an invite to the annual barbecue at Gracie Mansion, commemmorating the ADA [Americans With Disabilities Act] I met Jody there, and we took a picture with Mayor Bloomberg. That, and the party today at the Pendergasts, will be the only barbecues for me this summer, so I am grateful for both of those. It's nice to be in a place where I am not a scary oddity that people avoid looking at. I am going to look for more events like that in the future.

Thursday, August 14, 2008

ferncohen.comThe good news is tat NYC is ready to roll out the accessible taxi dispatch program, whereby a person with a disability can dial 311 to have an wheelchair-accessible taxi dispatched. After all, in London, every taxi is wheelchair-accessible. But there's a glitch -- a big one! Watch Arnold Diaz' "Shame on You" report. My reaction? "Oh, for Pete's sake!" Well actually, I had stronger words that went more like "Can't they do anything f---ing right?"

Saturday, August 2, 2008

ferncohen.comCheck this out!There is now an elevator in front of the office building at the corner of Union Turnpike and Queens Blvd, to the E and F subway! I know I don't live in Kew Gardens BUT it still excites me for two reasons:a) Forest Hills and Rego Park can't be far behind b) I can take the Q60 bus there, and board the subway to one of the many accessible stations in Manhattan......this would be faster than taking the Q60 snail-bus to 60th and 2nd and THEN boarding a snail bus elsewhere....

Friday, August 1, 2008

ferncohen.comLast week the Access-a-Ride driver referred to my aide Lynette [who is one year younger than I] as my granddaughter. I looked in the mirror, and I knew why. I have had to stop coloring my hair and getting haircuts. Before ALS. I colored my hair at home with a $7 box, and had the salon color it when I had extra money. But now, $100 for a wash, color, cut, and blow, is totally unjustified when I am working hard to buy food and toiletries. So I guess I am destined to look like a grandma. Thank goodness my sister introduced me to a site where I can do work online for Amazon gift certificates. I was able to buy Depends through Amazon last week.

A few dollars saved is my big high lately. At support group on Monday, I said that money has been a challenge for me, since the $725.00 that Medicaid allows me to keep every month, is eaten up by monthly minimums on old credit cards, which have gone to 25 or more percent interest due to [in some cases] one month of a late payment. There is no way this can ever get better for me, so I can look forward to scrounging for basics and looking like a grandma of a 50-year-old for the rest of my life. It's a good thing I rarely get invited anywhere anymore. A few people at my support group were my angels last week when I said I didn't know where I was going to get the money for groceries for next week, and so was going to put my fingers to the keyboard for Amazon credits.

Speaking of putting my fingers to the keyboard, reality hit hard last week. I told my sister I needed to make more online to straighten out a miscalculation that is putting me more and more in the hole. She referred me to a site that answers questions from people on mobile phones. But, alas, I don't type fast enough on the laptop keyboard, and I failed the test. My rinJg finger and pinkie on my left hand are stiff, and slow me down. But thank goodness my sister Haley finds these opportunities, because often they keep me going in groceries. And the groceries she sent from Trader Joe [my favorite place!] and the cash help Dad gave, came just at the right time!!

But I did go to PS1 with Jen and Judy. Moneywise, I really shouldn't have.......$5 to get in, $4 access-a-ride, $7 in the cafe. I just really needed to get out of the house and go to a museum. Jen and Judy are two people who still want to explore places with me. Exploring neighborhoods and venues was a big pastime of mine, pre-ALS. Sadly, I am going to have to tell my neighbor I can't swing dinner out this week. It's a real case of "be careful what you wish for", because it will be a while before I can accept fJriends' invitations, if ever! So I don't complain about loneliness anymore; time alone in the house is money not spent. This is all very depressing for me, especially in summer. But it has to be this way. And, as lonely as it gets, the payoff is that eventually the phone calls may stop, and I can avoid getting sued and bankruptcy. Frugality is good for the spirit.

Yesterday, I went to the final appointment at the NYU Dental Clinic. For not having been to the dentist since January of 2003, I was pretty amazed that they found no cavities. And here was the best part: Lynette got them to reimburse my access-a-ride! I don't even know to ask for these things. They even gave me the name and number of an ambulette I can use next time to get transport for free. Evidently, with Medicaid, you get free transportation to and from medical appointments. Why did I not know this, and who was supposed to tell me? The doctor's offices when I booked the appointment and told them I was on Medicaid? The social worker at the ALS clinic? If you don't grow up in a home where family members collected benefits [handouts] from the government, you don't what to ask for, and they don't tell you. It really irks me to see immigrants/refugees in my neighborhood paying for groceries with food stamps, getting into private ambulettes and walking around [often with no cane or walker] with their home attendants. How do they come here, speaking no English, but finding out this information I never know about, even though I have worked hard all my life, voted, and paid taxes???!!!!!

So, I can't justify any unnecessary spending, like entertainment, eating out, beauty treatment. Maybe this was meant to happen, so that I could have more time alone, and not focus on what I am NOT doing this summer, and who is NOT including me in summer fun. Instead, I have to, once again, see what I can sell on eBay.